A department that makes life harder for people with disabilities

Huffington Post’s Canadian edition yesterday published an investigative report by a team of student journalists from the University of King’s College detailing the housing crisis facing Nova Scotians with intelectual disabilities.

There is not enough room in the system for all of the people who need a place to live. They languish on waiting lists that are hundreds of names long. Their families, in turn, must support them with scant financial, caregiving or community programming resources. Eventually the families get too old or sick to do it, making the situation for their relatives in rehab even worse.

With so little room, placements are driven by crises. These crises, in turn, lead to inappropriate placements that only exacerbate individuals’ disabilities and sometimes cause mental health issues.

It is a bureaucratic system driven by policies, not people’s needs. And in the instances where policy would help to improve lives – in properly licensing, regulating, staffing and overseeing housing options – the system falls short.

Successive provincial governments have known all about this crisis and have repeatedly promised to fix it. The current NDP government is no exception.

After years of inaction, the Department of Community Services (DCS) recently produced a report — more accurately a discussion paper — about options for dealing with the crisis. The new document repeats sweeping promises of change, but DCS continues to ignore the findings of a 2001 report it commissioned that could have served as a basis for action 12 years ago.

“The Kendrick report is now over 10 years old and basically the fundamentals of the Kendrick report are no different now than … 10 years ago,” Dr. Brian Hennen, a past president of the College of Family Physicians of Canada, told the student journalists.

Jenn Power, Atlantic Regional Co-ordinator for l’Arche Cape Breton [and—disclosure—my daughter-in-law] summed up the crisis on her Possibilities blog.

[T]he primary struggles of the individuals profiled in the piece are not their disabilities per se, nor the way those disabilities might affect their mobility, learning skills, or emotional health.  Instead, the suffering they endure arises from the way the provincial “support” system treats them as a result of their disabilities.  They are reduced to their diagnoses, their difficult behaviours, their classification level.  They languish on endless waiting lists with no idea of the future, then are hurried into last-minute crisis placements at warehousing facilities.  They are forced to fit into an existing (outdated) system; the system is not expected to change to fit the needs of individuals.

This is not news to any of us who have friends or family members with intellectual disabilities, or who have been involved in this field for any length of time.  Our people are overlooked, patronized, ignored, devalued, and abused.  Their voices are not heard.  But boy, do they have something to say.

At Nova Scotia’s l’Arche communities, and many other DCS-funded homes, bureaucratic rules often deepen the impact of disabilities, rather than lighten them. Here’s one of several examples Power cites:

Lindsay and Tanya, both of whom graduated from high school and hold down full time jobs, would say that they deserve the right to stay home alone and watch TV or read a book or relax on the couch for a couple of hours every now and then.  But because they live in a provincially funded group home, they are denied this dignity of risk and are forced to join whenever their housemates leave the house.

Of the ways Darrell Dexter’s government failed to achieve its supporters’ aspirations, none is more disheartening than its failure to bring order, purpose, and humanity to the Department of Community Services. Will the next government do any better?

When Janet met Rita

The late Janet Moore, the founder of l’Arche Cape Breton who was profiled here on her death in 2010, was a huge fan of Rita MacNeil. Janet’s friend Mary MacDougall arranged for the two to meet at Rita’s Tea Room on her 60th birthday, in 2007.

Jenn Power, Atlantic Regional Co-ordinator for l’Arche (and my daughter-in-law) described the event on her blog.

Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in and stealing Janet’s peace, her humour, her independence, her ability to enjoy life. Intense emotion can overwhelm her, and this day would surely be filled with that. Having to keep to a rigid schedule, once something she demanded and loved, can now leave her in tears. So we crossed our fingers, surrounded Janet with people she knows and who know her, and off we went.

Janet-Moore-with-Rita- 275The brilliant sun over the blue waters of the Bras d’Or as we drove through Eskasoni and East Bay seemed to be a good omen. We arrived at the Tearoom in good spirits, having sung along with Rita on the CD player the whole drive down. With a friend on each arm, Janet plodded up the ramp into the Tearoom….

Before long, Janet caught sight of Rita. She squinted up her eyes, as she often does to help her focus, and tilted her head slightly to one side as she worked to connect what she must have imagined was a mirage with what evidently was becoming a reality. As everything clicked into place, she quietly, and with a sense of disbelief and wonder, exclaimed, “Rita!” In a manner fitting her age and the occasion, Janet slowly walked toward her idol, looked closely into Rita’s face to make sure she wasn’t dreaming, then gently wrapped her arms around Rita’s shoulders, placed her head on Rita’s chest, and smiled. This smile did not dim or fade once during the two hours we spent with Rita at lunch!

The lunch was lovely. Rita was an absolute gem, making small talk with our strange crew of friends. She had no trouble joining in Janet’s typical teasing – “chicken legs”, “old hen”, “you’re cracking up.” Although Janet simply would not stand for anyone to call Rita an old hen!

Several times during lunch, Janet would gaze at the photo of Rita on the CD she clutched in her hand (a CD, incidentally, that Rita had given her, signed, as a birthday gift) and then look up at Rita, in the flesh, sitting right next to her at the table. This seemed to be a wonder that Janet could barely comprehend. And then she would tune into the music coming over the speakers, which was (of course) Rita MacNeil. She would look up at the speakers, at her CD, then again toward her host, in absolute amazement. This woman was even more incredible that Janet had imagined!

After a delicious lunch, and what seemed like endless hugs, we prepared to leave. I linked Janet over to the guest book, where her shaking hand and deteriorating vision made it virtually impossible for her to write much. But she did her best, telling me she had written her name and “I love you, Rita.” And on that note, we left to drive home.

I believe that we discover what is holy, sacred, mysterious, through our relationships with others, and those few hours with Janet were filled with holiness and mystery – and not just the mystery of how Rita could be sitting at our table and singing on the PA at the same time! But that visit to the Tearoom with Janet brought me back to what is means to live a life of gratitude, to be present to each moment, to embrace my own vulnerability and allow it to bring me closer to others instead of isolate me from them.

Incidentally, Rita, unbidden, picked up the tab for Janet and the 10 l’Arche friends she brought along for the birthday celebration. Quite a lady.

Shocking research: People with Down syndrome are happy. So are their parents.

When people learn that my son Silas and his wife Jenn Power adopted a pair of identical twins with Down Syndrome, they often say one of two things: “I could never do that,” or “You must be saints.”

I love Silas and Jenn beyond measure, and admire them hugely, but I can attest they are not saints. The explanation for their decision to adopt Josh and Jacob lies elsewhere.

As members of the L’Arche Community in Iron Mines, Orangedale, and Mabou, Cape Breton, Silas and Jenn have lots of experience working and living with developmentally disabled people. It’s what they like doing, and they’re good at it. Like most people who spend time at l’Arche, they describe the experience as one of blessings received more than bestowed.

This week comes scientific evidence they are not alone. Researchers at Boston’s Children’s Hospital and other centers carried out one of the largest surveys every conducted of people with Down Syndrome and their families. Respondents with Down reported overwhelming happiness with their lives, and family members said having a child or sibling with Down had been a positive experience.

The researchers published three studies on their findings in the October issue of American Journal of Medical Genetics. Their study sought to answer the questions most commonly asked by prospective parents of children with Down syndrome:

  • What is life actually like for parents who have sons and daughters with DS?
  • How many of them love their son or daughter with DS?
  • How many of them regret having their child?

The researchers heard from heard from 2,044 parents of children with Down syndrome:

99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without DS have good relationships with their siblings with DS. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with DS and indicate that their sons and daughters are great sources of love and pride.

They surveyed 822 siblings of people with Down Syndrome::

More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with DS; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without DS. Among older siblings, 88% felt that they were better people because of their siblings with DS, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with DS as positive and enhancing.

Perhaps most importantly, they heard from 268 people with Down Syndrome, aged 12 or over:

[N]early 99% of people with DS indicated that they were happy with their lives, 97% liked who they are, and 96% liked how they look. Nearly 99% people with DS expressed love for their families, and 97% liked their brothers and sisters. While 86% of people with DS felt they could make friends easily, those with difficulties mostly had isolating living situations. A small percentage expressed sadness about their life.

Longtime readers of Contrarian have encountered Josh and Jacob before, celebrating Canada Day with their rousing rendition of O Canaduck!, and on a fleeting moment when they were definitely not happy with their lives.

The experience of actual parents with actual Down syndrome is the best answer for those who say, “I could never do that.” They might not choose it, but when responsibility for someone with Down syndrome falls upon them, most people rise briskly to the occasion, and look back at the experience as positive and rewarding.


Bomber LeBlanc’s last act of defiance


Mary Cecilia “Bomber” LeBlanc, shown above with L’Arche assistant Mavis at the 2007 Cape Breton Island Film Series party for l’Arche Cape Breton, died peacefully Thursday morning in her home at The Vineyard, a L’Arche residence in Orangedale, surrounded by friends and caregivers.

Death came six days before her 60th birthday, and, incredibly, hours before a provincial health bureaucrats were to meet to begin planning her involuntary removal from l’Arche, over protests of family, friends, and caregivers.

Mary was a small woman with a steely will and an outsized capacity for getting her own way—and then leading a chorus of laughter about the outcome. Deaf from birth and without speech, she was orphaned at age three and spent 30 years in institutional care before finding a new life at l’Arche, where she lived for the last 27 years.

In her eulogy at Sunday’s funeral, l’Arche Community Leader Jenn Power* described Mary as “a silent woman who spoke volumes.”

[C]learly, somewhere along the line, she made a decision: that she would not let the circumstances of her life define or limit her; that she would stand up to those who tried to keep her down and say, albeit without words, “You’re not the boss of me.” In the disability world today, there is so much emphasis on self-advocacy. Truly, Bomber was a self-advocate before her time….

Mary’s death was her final act of defiance. For some months now, we have been in discussions with the Department of Community Services about whether Mary’s needs would be better met in a nursing home. Her family and her community were strong advocates for supporting Mary in her home at The Vineyard. And yet, the process was moving forward. On Thursday, November 4th, Mary’s case was being heard, and it seemed obvious that she would be placed on a waiting list for nursing home care. Instead, on Thursday, Mary died — the first thing in her life she ever did in a hurry. A pretty powerful act of self-determination.

To the officials involved, this is, I am sure, a complex issue, replete with rules, protocols, standards, evaluations, criteria, and, no doubt, budgetary considerations. Yet the meeting that would decide Mary’s fate allowed for no participation by her family, her guardian, her community, or her friends—let alone by Mary herself.

Here is an issue where Health Minister Maureen MacDonald could show leadership by deliberating on some fundamental questions: Must every death be medicalized? Do Nova Scotians have the right to choose to die at home among those who love and care for them—even, and perhaps especially, Nova Scotians with disabilities?

* Disclosure: As regular readers know, Jenn Power is my daughter-in-law; my son Silas, Jenn’s husband, also works at l’Arche Cape Breton.

How my family survived a highway crash

crash - 2 - 550

The five occupants of this 2008 Dodge Grand Caravan — my son, daughter-in-law, and three grandchildren — survived a head-on collision on the TransCanada Highway Thursday evening. I offer the following details in hopes that other families will find it helpful to understand the factors that decisively improved their chances of survival.

Shortly before 5 p.m, August 26, my family was westbound on Route 105 in Lexington, Nova Scotia, just north of the Canso Causeway, when a severe rain squall hit the area. Daughter-in-law Jenn had just slowed down when an eastbound car apparently hydroplaned and spun across the centerline into their path.

crash 3 - 275

Grandson Jacob, age 6, suffered a broken femur. The others — Jenn, my son Silas, Jacob’s twin brother Josh and sister Maggie, 8 — were badly bruised and badly shaken. Surgeons at the IWK-Grace Hospital in Halifax repaired Jacob’s leg Saturday. Doctors expect all to recover fully. We are grateful to them, and to the EMTs and volunteers who responded to the crash.

The driver and lone occupant of the other car, Marlene MacDonald of Port Hawkesbury and Washabuckt, died at the scene.

I offer my sincere sympathy to Ms. MacDonald’s daughters, grandchildren, and siblings. Events like this cause those affected to reflect on counterfactual alternatives; since Thursday, our family and friends have thought constantly of the MacDonald family’s suffering, and how easily it could have been ours. I am sorry for their loss.

Death and injuries in car crashes result not from a vehicle’s collision with another object but from what’s sometimes called the second collision — that of the occupants with the inside surfaces of the car. The second collision occurs a fraction of a second after the first.

Here are some of the factors that made the second collision survivable in my family’s case:

  • Jenn reduced speed to reflect driving conditions, lessening the force of the subsequent impact.
  • In response to legislation, insurance company pressures, and consumer demand, automobile manufacturers have made tremendous improvements in the crashworthiness of their cars over the last decade. Modern vehicles are better engineered to absorb and dissipate the force of sudden impacts while maintaining the integrity of the passenger compartment.
  • Jenn and Silas drove a 2008 Dodge Grand Caravan equipped with front and side airbags. The Insurance Institute of Highway Safety gives this model a “good” rating (its highest) for “frontal offset” and “side impact” test results. You can check the crashworthiness of your car here.
  • All the occupants were secured with optimal, industry-recommended safety equipment: the adults with standard lap-and-shoulder belts; the eight-year-old with a child’s safety booster seat held in place by a  lap-and-shoulder belt; the six-year-olds by properly secured child safety seats appropriate to their size and weight.

The last point merits emphasis. For many families, child safety seats are expensive to purchase and tedious to install and use. After Thursday, the expense and inconvenience look pretty small to us, the benefits enormous.

Finally, a word of thanks to the numberless, nameless engineers, auto executives, safety advocates, insurance industry risk analysts, and legislators who helped my dear family survive.

Their survival is not a miracle. It is the result of considered steps by real people to improve highway safety.

The Old Hen – a moral authority and a role model

Christian Lüdde of Germany, who worked as an assistant at L’Arche Cape Breton in 2002 and 2003, writes:

I… was fortunate to live [in Janet Moore‘s residence].

Jenn and Janet-250
Jenn Power and Janet Moore
I very much appreciate the way Jenn kept us informed on Janet’s state and I also appreciate the very appropriate words you found to briefly describe Janet’s impact. You are right, it is hard to overstate her impact on L’Arche Cape Breton and many individuals like me. Janet was nothing short of a moral authority for me, a role model that I slowly learned to accept. So I thank you for your article and try to think that remembering somebody like Janet makes me sad, but really should make me smile and feel warm in my heart. Because this is her legacy.

The Old Hen

Janet Moore Birthday Hat

Janet Evaline Moore, founder of L’Arche Cape Breton, died peacefully last night at her home in Orangedale, two days before her 63rd birthday.

Janet Tom and Ann-350
Tom and Ann Gunn and Janet Moore

Tom and Ann Gunn invited Janet to live with their family in 1983, marking the start of an intentional community that is now home to some 25 Core Members and a varied group of assistants from Cape Breton and around the world.

Janet Moore was a gentle, funny, loving woman, with an out-sized capacity to move and inspire people around her. She and her long-time friends, Cathy Brady and Mary LeBlanc, the Old Hens, enlivened events at L’Arche with a running commentary from the sidelines — a cross between a comical Greek chorus and a kinder, gentler version of the Muppets’ Statler and Waldorf.

Janet adored the Cape Breton singer Rita MacNeil, who graciously hosted a 60th birthday party for her at Rita’s Tea Room in 2007.

Cathy Brady, Rita MacNeil, and Janet Moore
Cathy Brady, Rita MacNeil, and Janet Moore

Over the last two years, Janet underwent the steep decline that often overtakes people with Down Syndrome in their 50s and 60s. She spent her last days at The Vinyard, a L’Arche residence in Orangedale, surrounded by friends who stroked her hair, held her hands, and sang quietly to her.

“Our community is making a significant passage as we say goodbye to Janet,” Community Leader Jenn Power wrote in an email to L’Arche friends early this morning. “We know life will feel different now, but we know just as surely that Janet’s faithfulness to the mission of L’Arche will continue to be our example.”

Mary LeBlanc and Janet Moore
Mary LeBlanc and Janet Moore

It is difficult to overstate the impact Janet had on everyone at L’Arche, or the sadness that will be felt there, and among the far flung diaspora of former L’Arche assistants around the world.

The wake will take place from 10:00 am to 9:00 pm on Janet’s birthday, Saturday, at The Vineyard in Orangedale. The funeral will be at 2 p.m., Sunday, in the L’Arche Chapel at Iron Mines, with a reception to follow in Orangedale.

A father responds to the Down’s ‘cure’ debate

Silas Donham responds to posts on the New York Times Motherlode blog criticizing those who would reject potential chemical treatments intended to improve intellectual function of infants with Down syndrome. This difficult topic provoked a debate here on Contrarian that was remarkably thoughtful and respectful. But when the Times picked up on our discussion, many commenters were incredulous that any parent would hesitate accept such treatments for their children. A few had nasty things to say. Silas responds:

First, the disclosure: I am Jenn Power’s husband, father to Jacob and Josh, and son to contrarian.ca, the blogger who got all this started. Like Jenn, I have spent my adult life living and working intimately with people who have intellectual disabilities.

Many of the contributors to this discussion seem to be imagining a magic pill without risk or side-effect that would remove the intellectual impairment associated with Down Syndrome. Medical treatments like that do not exist. Of course Jenn and I want our children to have every advantage, and the fullness of potential, which is available to them. Our boys have glasses, they have tubes in their ears, they attend school as well as physio-, occupational, and speech therapy, a clinic that focuses on eating difficulties, an adaptive swim program, a youth group, church, friends’ birthday parties, etc. One of my boys had surgery to repair a hole in his heart. I home-schooled them for a year to get ready for regular school. But we would not allow a medical researcher, however sincere and well-meaning, to take a potential chemical blender to their brains in infancy. Thank you, no. In that sense, our boys are just fine the way they are.

Many of you have posed questions from the imagined viewpoint of a person with a disability: if you had Down Syndrome, wouldn’t you want to be “cured”? Can you imagine a person with no legs NOT wanting a treatment that would give him legs? It is a sad observation that the voices of actual people with disabilities are usually absent from discussions of this type (thanks to Ingrid in San Francisco for bucking that trend). In fact, their answers to these questions are often not what you would expect. I first contemplated that idea when I heard a CBC radio piece produced by Dave Hingsburger, a counsellor and disability rights activist in Toronto. Over the course of a two-hour program, Hingsburger talked to many members of the disability community, including people with Down Syndrome, as well as a man who has no legs. At some point in the course of other discussions he asked each person he talked to whether, if presented with a pill that would get rid of their disability, they would take it. Without exception, they all said no.

At the time, this was an earth-shattering notion for me. But the fact is that I know many people who have intellectual disabilities. No-one I know sees themselves as diseased, suffering, or in need of a cure. So who is really imposing their viewpoint here?

Jenn framed her response to this medical research in terms of the benefit she has received from her relationships with people with disabilities, and the benefit society as a whole stands to gain from them. Unfortunately some of you have construed that to mean that people with disabilities should be kept in a limited, suffering state so the rest of us might benefit. Several of you even made the hurtful comparison between our boys and “therapy animals.”

Perhaps it is a symptom of the way people with disabilities are devalued in our society that we so often feel the need to justify them by naming the benefit other people receive from them. No other group in society needs to do this. However, that is not the basis by which we make decisions about our boys’ lives. Everything we do (including the hypothetical rejection of experimental brain treatment) for them is with their best interests at heart. And to respond to other posters, we have not forgotten what might happen to our boys when we are no longer around. That is why our whole lives are devoted to people with intellectual disabilities, from our parenting to our professional lives with L’Arche to our involvement in the local school to our involvement in discussions such as this one. A society that recognizes the gifts of people with disabilities is one that goes beyond inclusion and tolerance to real relationship.

People are complicated organisms. Tinkering with one aspect affects a host of others. As a society we tend to overvalue independence and intellectual competence. These things do not bear a linear relationship with happiness or quality of life. There are a lot of independent people who lead very lonely lives. In my experience of people with intellectual disabilities, the ones who are more capable and independent are often the ones who have the hardest time finding a place of belonging, and who therefore lead lives of greater suffering. I don’t mean to say that capability is a bad thing; I just mean that it is complicated, and that makes the ramifications of this treatment hard to predict.

We don’t know whether this potential brain treatment will lead to greater quality of life for people with Down Syndrome. We don’t know what its risks and side-effects might be. We do know that people with disabilities are undervalued, insufficiently supported, and too seldom consulted or in control of the decisions that affect their lives. Why don’t we put more work into supporting the weaker members of society, combating bullying and abuse, and discovering and learning from the experience of people who have disabilities, and get less excited about expensive, unproven treatments that may do more harm than good?

Welcome New York Times Motherlode readers

For those who have followed the debate over potential treatments for Down syndrome in the New York Times parenting blog Motherlode to its source here on Contrarian, I have assembled a series of links you might want to follow.

Our discussion of this issue began with this post back in November. Jenn Power elaborated on her concerns here, and Dr. Ahmad Salehi, the Stanford researcher whose work touched off the discussion, responded thoughtfully here. Jenn’s husband Silas Barss Donham, my son, weighed in here.

Other reader commented here, here, and here.

Jenn is the community leader of L’Arche Cape Breton in Iron Mines, Nova Scotia, a community for “people with developmental disabilities and those who choose to share life with them.” It’s one of about 130 L’Arche communities around the world founded by the acclaimed humanitarian and philosopher Jean Vanier. A few links:

You may have gathered that I’m very proud of my daughter-in-law. It was distressing to see so many Motherlode commenters leap to the conclusion that, because Jenn recoiled at the prospect of chemical treatment for her sons’ intellectual impairment, she must be selfish or patronizing. In fact, Jenn is one of the least selfish, most compassionate and giving people I know. My own post on Motherlode elaborates on her admirable work.

NY Times picks up our Down syndrome thread

Motherlode, a New York Times blog on parenting, has picked up on Contrarian’s discussion about potential treatments for the intellectual impairment associated with Down syndrome — and touched off quite a debate of it its own.

Our own discussion began with L’Arche Cape Breton Community Leader Jenn Power’s disquiet at the assumption that Down syndrome constitutes a disease in need of curing. Jenn, who is both the adopted mother of identical twins with Down Syndrome and — disclosure — my daughter-in-law, spoke eloquently of Down traits that don’t need fixing:

[I]ncredible smiles, overflowing affection, stubbornness, great sense of humour, cute toes, love for orange pop and Rita MacNeil, endless capacity to forgive… the list goes on and on.  I am not sure I can articulate why, but I find this article both upsetting (lump in my throat and eyes welled with tears right now) and disturbing.  Why does everything need a “cure?”

david-sThe Times quoted at length from Jenn’s subsequent, more detailed Contrarian post, and from Stanford University researcher Dr. Ahmad Salehi’s thoughtful response here as well. Motherlode’s thread on the subject has now attracted more than 100 comments. Several are thoughtful and constructive, but a shocking number come from people quick to condemn Jenn as “selfish” or “patronizing” for not jumping at the chance to chemically enhance her sons’ cognitive skills.

Many Contrarian readers are familiar enough with Jenn to know her life is the antithesis of selfishness. As I wrote in my own comment on Motherlode:

As the leader of this extraordinary [L’Arche] community, Jenn manages an incredible range of human emotions, trials, joys, and tribulations, along with the myriad practical details required to manage any large group of diverse people. She does this with enormous tact, kindness, generosity, wisdom, humor, firmness, practicality, and love. And immense hard work.

From this I conclude that, despite decades of progress integrating developmentally challenged citizens into society, we have a long way to go in overcoming the kneejerk tendency to view people like my grandsons as less good and less valuable than the rest of us. That’s our loss as much as it is theirs.

In a separate post aimed at New York Times readers, I will include links to all our Down syndrome posts, and to several short videos featuring the extraordinary folks at L’Arche Cape Breton, including my esteemed two grandsons, Josh and Jacob.